Confronting a System Where Statistics Often Outlive People

Community members protest on the streets of downtown Newark to demand fair housing and employment rights (April 4, 2013)

“Where do people earn the Per Capita Income? More than one poor starving soul would like to know. In our countries, numbers live better than people. How many people prosper in times of prosperity? How many people find their lives developed by development?”

                                                                ~Eduardo Galeano

On the floor directly below my office in Newark’s Department of Child and Family Well-Being, there sits a government-run health clinic and a Women, Infants, and Children (WIC) center that resemble many of the community health facilities across the five wards of the city. Long lines of patients wait for hours for their numbers to be called by the nurse, often missing an entire day of salaried pay to accommodate the health system’s inefficiencies. Once the patient’s number, not his name, is called by the nurse to the examination room, his suffering is then summarized into neat categories, so that his patient chart can be sent to our department and his information can be conveniently labeled and analyzed by our team. As we crunch numbers, we can clearly hear the coughs and cries of sick children directly below our department. And yet we continue to reduce the complexity of their diseases into concise Power Points for donors, to represent their individual lives in government reports with statistics rather than their stories, and to commodify their treatment plans into cost-effective formulas. Even though only one floor separates Newark’s marginalized patients from the policy decisions that often dictate whether they will receive medical treatment or not, the distance between their realities and the numbers that seem to define their lives often feels limitless to me.

Today, a homeless woman without shoes stood in the line to board the bus at Newark Penn Station with me. She requested the bus driver to board without paying the fare because she did not have money and her feet blistered from walking on the hot pavements of downtown Newark. I wondered whether her basic health necessity, the ability to walk in comfortable shoes, would ever be recognized by my department as a “legitimate” health priority? Because when we place all our attention on quantitative data, we focus on the illnesses of the majority, in order for the numbers to grab the attention of Newark’s politicians and policymakers. In addition, statistics can often detach decision-makers from complexity, and they can fail to explain injustice and the daily struggles of the forgotten. I have begun to notice that while research data often highlights disparities in health outcomes, it does not necessarily change the reality of an epidemic. Furthermore, the categories that we center our data around are in themselves often arbitrary and can condone a “blaming the victim” approach to health interventions. For example, the common labels we use to code research subjects in our office often focus on race, ethnicity, and individual health behaviors (i.e. drug addiction, commercial sex work, etc.). We rarely stratify data based on the actual root causes of the people’s health outcomes, such as their poverty levels and neighborhood violence levels. But if we implemented these alternate categories, we would be held accountable towards working on systemic change, whereas our former categories validate our disproportionate focus on behavior change and short-term solutions, which is the desired route for overwhelmed, resource-constrained decision-makers.

However, no matter how cynical I became about the sole use of quantitative data to drive social change, I began to accept the fact that the statistics in themselves did not make me uncomfortable. The relevance of research and data collection cannot be undermined when it comes to providing an evidence-based template for developing needed public health policies and programs for Newark. It was the fact that so many of the political and financial decisions that govern patients’ lives are dictated by data collected by outside “experts,” rather than the patients’ stories and voices that could successfully incite structural change in Newark’s health care system. And those very statistics often shape the rhetoric repeated week after week at press conferences on the steps of Newark’s City Hall. I have come to believe that we do not need more statistics to prove the suffering of Newark’s marginalized. And we certainly do not need more political rhetoric. Instead, we require action. Global health activist Jonathan Smith powerfully exclaims, “We allow our rhetoric and policies to fail with no repentance, remaining in a pitiful cycle with no signs of change.” Statistics must be tied to political and legal tools, rather than stale messages that create extreme cycles of attention-grabbing and inaction. Statistical data is most often used to build more cost-efficient health systems, but why do we not also turn our imagination toward a more equitable, just, and morally sound health system that will prioritize the needs of the barefoot homeless woman I met on the bus today? What if in addition to statistics, governments added another level of data that revealed the truth, the stories of the marginalized? Because after relying almost entirely on numbers for the past six months, I have come to realize that all the data about the current struggles and future solutions for Newark’s health system can be found by the true experts, the patients themselves.